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Chicken Pox and immunosuppresants?

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Posted 1/15/2009 3:23 AM (GMT 0)

RightOutStraight02 said...
RIDER


I did not suggest not treating the Crohns, I'm sure it can be understood that is NOT at all what I was trying to say. I understood it that the doctors wanted to try tapering off the prednisone before getting the vaccine, and all I was saying was that if it was me, that is what I would try first...obviously situations change depending on how tapering off pred. goes.

Furthermore, I don't think we are here to criticize each other's opinions, I was simply offering a "sorry for your situation, from what I understand here is what I would do".

I agree, didn't mean to offend you.
Posted 1/15/2009 3:30 AM (GMT 0)

Hi Rightoutstraight02

Thanks for your reply, my daughter is 15 right now. I too hope her chances of getting this are low, but will be cautious.

I'm sorry to hear that you haven't been doing well lately. Did the recent resection not help?

You're very young to have fibromyalgia, I didn't even know that it could afflict someone that age. 

Tom.  

Posted 1/15/2009 3:43 AM (GMT 0)
Hey there 73monte,

I hope your daughter gets on the road to remission soon!
Sad to say I have been doing worse overall since my resection surgery this past October, though I've been told it can take up to 6 months to "bounce back", so we will see. I didn't even know what fibromyalgia was until I was told I have it! Hopefully your daughter won't get it, at least not at such a young age. I do not know much about Imuran, and am very curious about it because my doctors have never suggested it for me. I will be starting Remicade this week or next week. Has your GI ever brought up 6mp? Maybe it wouldn't be applicable in her case, but I know mine tried that before anything else.
Posted 1/15/2009 3:48 AM (GMT 0)

Rightoutstraight02,

From what I understand, Imuran and 6mp are very much the same drug. Some tolerate one over the other, but are very much the same. How was the 6mp for you? I didn't know it could take so long for a resection to show improvement. Why did they do it?

Posted 1/15/2009 3:54 AM (GMT 0)
Ah, I'll have to look up Imuran a little more. As many here can probably tell though I've had this disease for almost 7 years I am very behind the learning curve when it comes to research, something I am recently trying to improve (up until recently my mom was handling it all for me!). 6mp and I don't tend to agree with one another very well, and that is why at this point I am moving on to the Remicade. I had the resection in October because I had a severe narrowing that was completely unresponsive to Prednisone. The way I understood it, the docs felt like it was scarred and was not going to budge for any kind of treatment at that point. I had 10 inches of my small intestine (apparently including the terminal ileum and part of the cecum) removed. I thought that surgery was the miracle cure but it has really been quite the opposite.
Posted 1/15/2009 4:18 AM (GMT 0)

Right out straight,

Did they tell you how long it would take to realize any benefit from the surgery? Do they consider you mild, moderate, or severe?

Posted 1/15/2009 4:27 AM (GMT 0)
Nobody wanted to give me anything more than a vague estimate of when I would start to feel better. I was also unfortunate and got a post surgery wound infection which added 6 additional weeks to my healing process. I was back in the ER about a month ago with new inflammation which I didn't foresee being there so soon. I guess it depends. I have what I guess is considered a moderate case. I wondered how your daughter is coping with school and the social scene with her condition? I know it has become increasingly difficult for me as things get worse, and I had a hard time in high school when I had to be on Prednisone especially.
Posted 1/15/2009 9:46 AM (GMT 0)
Broomhilda, I have a question for you. I haven't posted often but recently had an experience after taking my humira shot and broke out in the red spots, which itched, and then they became a dry scaly place that as you said look almost like a ringworm but they aren't. I have them scattered all over my body. Did yours itch and did they somewhat resemble a chicken pox in a way? Im 58 yrs old, been on Humira for five yrs and this is my first what I believe to be reaction. The bad thing was my rhummy didnt want me to come into his office for fear it was the chickenpox and I would expose other patients! SO, I've had to wing this one alone and it's been awful. Had headaches too and this has gone on for 7 wks! Hope you can help. I'm better now but still have the darn spots. Hope you can help. (I'm treating RA and any and all comments from other readers will be greatly appreciated as well)  [email protected]
Posted 1/15/2009 1:46 PM (GMT 0)

Sunpuppy said...
I haven't posted often but recently had an experience after taking my humira shot and broke out in the red spots, which itched, and then they became a dry scaly place that as you said look almost like a ringworm but they aren't. I have them scattered all over my body.

When you say "all over your body", do you mean your torso? Though they can come up elsewhere on the body, itchy, scaly spots on the torso could be shingles; a related herpes virus. Has ANY doctor looked at your spots?

I got shingles at the young age of 23. A student of mine had chickenpox, exposed me, and that's what I ended up with instead.rolleyes Just thought I'd pass that on... You don't have to be "older" to get shingles!
Posted 1/15/2009 1:50 PM (GMT 0)
As far as High School goes, it is getting difficult. The Prednisone, isn't really making her look bad at all, as she's pretty thin, but she's just so extremely tired since coming out of the Hospital. Also, she has developed a bit of shakiness in her hands. I can see that she is starting to wear down. She's tired of feeling the way she does. I've never seen her depressed, but she is starting to show the signs of it. All I can do is stand by and watch, which is making me depressed.
Posted 1/15/2009 3:26 PM (GMT 0)

73monte said...
As far as High School goes, it is getting difficult. The Prednisone, isn't really making her look bad at all, as she's pretty thin, but she's just so extremely tired since coming out of the Hospital. Also, she has developed a bit of shakiness in her hands. I can see that she is starting to wear down. She's tired of feeling the way she does. I've never seen her depressed, but she is starting to show the signs of it. All I can do is stand by and watch, which is making me depressed.

The shakiness is from the prednisone, I get that too.  It goes away quickly once I get down to 10-15mg or so.

My mom also gets depressed when I'm not feeling well, and I'm 32.  Try to stay positive around her 73monte, I find it quite hard on me when I can see how I feel affects my mom.  I know it must me hard.

Posted 1/15/2009 4:25 PM (GMT 0)

I checked the internet and did notice that the shaking seems to be a side effect. She never had that at all the first time on Prednisone 2 years ago. 

Trying to stay postive as you suggest. It is difficult. I'm convinced that it's the uncertainty that makes it so tough to deal with. When a Dr. gives you a diagnosis/prognosis, in definite terms, you have no choice but to deal with it, pick a starting point and do the best you can. With this disease, you don't get that. You get, I don't know, maybe, we hope, etc.

Thanks for replying,

Tom.

Posted 1/15/2009 5:19 PM (GMT 0)
In the past I had heard of chicken pox parties where parents intentionaly expose their children at a young age to the disease so they will get it and then get immune.  I had thought it was kind of crazy but now that I see all the problems not getting it can cause, maybe they were on to something.  But, I think this was pre-vaccine.

I actually got the pox at the same time I was in the hosptial for pnemonia at age 4.  The drugs for the pnemonia surpressed the spots so they had no idea why my fever was so high.  As soon as I got off the IV meds the bumps came out.

And for whoever asked, I think double pnemonia means it effects both lungs or both chambers of the lungs can't remember which.

Posted 1/15/2009 5:35 PM (GMT 0)
Tom,
Not to give you more to worry about... But the chicken pox vaccine isn't 100 % effective. I have seen many children in the past few years who have been vaccinated for chickenpox and they still got them. I know there has also been talk that they think they are going to have to offer all these young children getting vaccinated for chickenpox, boosters as adults (20ish) or they will end up with a bunch of very sick adults with chicken pox.
Realistically there are just some people that never get them. My sister has never had them. She was tested and does not have the antibodies, but she made it through all 3 of her children having them and still didn't get them. Just one of those things I guess.

I really hope you guys can come up with a solution for your daughter.

Tanya
Posted 1/15/2009 5:49 PM (GMT 0)

Hi Tanya,

I've been checking into this more and more. What you're saying is quite correct, in that the vaccine isn't 100%. But it would be the best chance of protection. The problem is, that Chicken Pox, while a harmless disease for children, becomes increasing dangerous as we age. The older you get, the worse it can be. In your sisters case, she is either very lucky, or may have had them very young without knowing it, and therefore has immunity.

Shingles is another example. I can speak from experience here. I had them in my late 30's. I had no idea what was going on. Wasn't too bad for me really, very fluish plus the welts/rash. The Dr. said that the older you become the worse it is. Someone in their 80's could die from it. 

Our GI still hasn't called back with a plan for my daughter. I think she's still confering. She really has alot of confidence in the Imuran route, but may be past the most opportune time for using it.

How are things since you resection?

Tom.

Posted 1/15/2009 6:37 PM (GMT 0)
Tom,
I hope you get answers soon. I was in a similar situation when I was on imuran before surgery. I have in the past had cervical precancerous cells. We were concerned about Imuran, then Humira, possibly making me at a much higher risk of reoccurance. In the end I decided that I just couldn't live with my crohn's and that treating my crohn's was more important for my everyday life, than the worry that I may have to be treated for the precancerous cells in the future. My everyday life with my family was more important to me. I try to live in the right now since this disease is so unpredictable. Some of my family disagreed with my decision and were quite paniced about what could happen, but I guess in the end we all look at things differently and have to weigh our options thouroughly.

Thanks for asking about me.... I think things are finally starting to get back to semi normal for me. I am still on flagyl for my most recent abcess, but I did get a good report from the surgeon this week. The abcess has shrunk, the first one is showing no signs of returning, and I should be done pred in 4 months. I am hoping the shakes go away with it. (It is rather annoying trying to drive a car when your stinkin' legs are shaking) My dr gave me the go ahead to go to the gym, as long as I used a trainer to help get my lost muscle back, but I can now walk around the block (a small block) and go up a few stairs without crawling, so things are good.

Now if I could sleep and not be so tired all the time, I would be set.

It is hard to believe I am now 11 weeks post op. After my fisrt resection I was back to work full time after 6 weeks. I just started part time work last week, this time around.

Tanya
Posted 1/15/2009 7:39 PM (GMT 0)

Tanya,

Sounds like you've been on a rough ride. Hopefully things will continue to improve for you. Just curious, why did you have to have another resection?

Posted 1/30/2009 3:12 AM (GMT 0)
Any update on this Tom? Are they holding off the Imuran until she can get the vaccine?
Posted 1/30/2009 3:47 AM (GMT 0)

Rider Fan,

Thanks for checking back. Really not too much fo an update here. The GI did phone and suggest that they would like to give her the vaccine when she's down to about 5-10mgs of Prednisone. Then, I'm not sure how long they have to wait for it to take effect fully, but at that point they will start Imuran. She did say that they have never encountered a Crohn's patient that had not had the Chickent Pox, so I think they are on unfamiliar territory here. 

Tom.

Posted 1/30/2009 4:07 AM (GMT 0)
I reminded my GI last week that I've never had chicken pox. He kind of did a double take and just told me to try to stay away from infected people. It's not like I can stop my MTX now though...

Sounds like a good plan for your daughter.
Posted 2/4/2009 2:52 AM (GMT 0)

My daughter is 10 with UC/Crohn's and has never had chicken pox.  She did have the vaccine and before she could start 6-MP, her doctor had blood tests done to test if the Chicken pox vaccine was "successful".  I don't know the exact name of the test but it had to be done at Promethius

Hope this helps

Posted 2/4/2009 3:45 AM (GMT 0)

Hi MustLoveDogs,

I was wondering if you could elaborate abit on the timelines for your daughter. Was she on or recently on Prednisone before having the vaccine? How long after having the vaccine was she able to start taking 6MP? How has she done on the 6MP, and how long has she been on it? 

Thank-YOu for your reply, it definitely helps.

Tom.

Posted 2/4/2009 4:02 AM (GMT 0)
Hi Tom
My daughter was diagnosed in December 2008. She had all of the regular vaccnines as a child (age 2-3) She was put on 30 mg Prednisone on Dec 10th and weaned down and off completely on January 20th. She started 2400 mg Asacol on Dec 23 and 50 mg 6-MP on Jan 15th. She had a blood test BEFORE she began the 6-MP (I forget the name of the blood test  but it was to find out if the CPox vaccine had been effective)and once we got the OK from her DR, she started 6MP. She has been on it a little over 2 weeks and is very tired and has had terrible joint pain. She had been doing very well on only Asacol but after 1 month of discussions with her DR. I agreed to put her on 6-MP but now I am regretting that decision.

How is your daughter doing? I would love to chat more with you - you can email me privately if you would like!

Gwen
Posted 2/4/2009 4:20 AM (GMT 0)

Hi Gwen,

I see, so she had the vaccine at a young age, and was being tested for it's effectiveness before the 6MP. I think I misunderstood your first post.

I wouldn't judge the 6MP as of yet, as it takes a few months to reach effectiveness. I'm no expert, but I think the joint pains would more than likely be from coming off of Prednisone. Even though you wean down slowly, it still takes some time for the bodies own production of cortisol to get back to a normal level.

Thanks for asking about my daughter. It's quite a long story. I will know more after next Monday when we go back for a SBFT. She had done fine for 2 years on Pentasa, but will be stepping up to Imuran shortly.

I would be very open to chatting with you anytime. I can assure you that you've come to the right place for support and answers. There are some very knowledgable people here. I hope your daughter is doing okay. Please feel free to ask any question on your mind. I know when my daughter was first diagnosed, I had a million of them. Who am I kidding, I still do. 

Tom.

Posted 2/4/2009 9:47 AM (GMT 0)
this got me thinking do the risks go up for people that get shingles? as far as complications from immunosupress.
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